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The views and opinions expressed in our blog series are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.
One of the most troubling aspects of caring for people at the end of life is caring for those left behind. The problem is simple – everyone focusses on the ill person while curative treatment is attempted. Everyone knows the supporting spouse, child, or friend is there, but the person with the illness is the patient, not the carer. However, being a carer is a risky business. Most carers have little health knowledge or background. The fear of doing the wrong thing and making the ill person worse is ever present. They do not know what is going to happen, and if things go wrong, whom to call and what to do. Studies of carers and patients at the end of life repeatedly show that the carers are more anxious and depressed than the patients themselves.
Roughly two years ago I had the good fortune of meeting a group of like-minded clinicians and academics. The interaction I have had with them has been incredibly beneficial to both my clinical and professional practice. However, we are scattered across Australia and New Zealand, and therefore we rarely meet in person and essentially only connect with each other online. I subsequently learned that the term for our group is a Virtual Community of Practice (vCoP). vCoP are becoming increasingly common and often arise from clinician connections through websites and social media platforms like Facebook and Twitter. vCoP can have a range of different purposes, including sharing of research or new clinical ideas, creating a platform for inter-professional collaboration, operating as an educational resource, working as a mechanism for advocacy, and providing a means to connect clinicians with the broader community.
A fundamental aspect of palliative care is that it is supposed to be “holistic care”. At an individual level, this emphasises the requirement to not only consider the many medical and practical aspects of a person’s care, but to also consider their emotional, social and spiritual needs.
At the level of policy and service development, this means being able to identify the many pieces of the puzzle that are required to support good end-of-life care for individuals, and to wisely fit these together so that the picture begins to make sense to everyone.
In South Australia, there has been steady progress in this regard, with the work of many individuals and organisations being the essential pieces that coming together to form a picture of a coherent end-of-life decision-making and care strategy which will better provide for the needs of people dying both in hospitals and in the community.
So, what are some of these “pieces”, and how do they fit together?
Pain is one of a range of common symptoms experienced by palliative patients. Keep in mind that a patient with a life-limiting illness can experience, on average, 12 or 13 different symptoms through their disease trajectory.
Pain is defined by the International Association for the Study of Pain as ‘an unpleasant sensory and emotional experience associated with actual or potential tissue damage’. Each of us has a number of influences that affect the way we perceive pain. The important thing to appreciate is that the perception of pain is unique to the individual.
The pathophysiology of pain is complex. Although it may help to classify pain as nociceptive or neuropathic to guide management, the reality is that pain is a syndrome with neuropathic, nociceptive, emotional, and psychosocial overlays. The cause of pain is often multifactorial and can involve the disease, its treatment, previous experience, and pre-existing morbidity. Not surprisingly, the management of pain is complex but it always begins and ends with assessment.
'Staying at home' is a bit of a mantra for palliative care. When time is precious, home and family beckon as a place of safety and comfort, where a person can completely be themselves. Yet for so many reasons it is not always easy to achieve – and particularly the goal of a home death. In this blog post I will reflect on my recent experience in community palliative care in Northern Sydney, and how general practitioners and palliative care services together can help make this happen for patients, and to happen well.
First of all, why is this hard? I can list a few factors that mitigate against patients being cared for well and comprehensively at home. Firstly, complexity of treatment plans and multiplicity of treating teams means that many patients are 'working full-time' as patients. Decision-making responsibility and prognostic leadership are diffused between multiple teams: the oncologists (medical and radiation), surgeons, palliative care, and doctors managing other chronic conditions. These may be spread across multiple public and private sites of care, with variable access to information about what is planned and why.